My Journey With Leukemia
My journey with started when I was 10 years old. I was an active kid who played on the basketball team when I started feeling very tired. I couldn’t stay up late, and I was falling asleep in class. Normally, I was a straight-A student, but my grades started suffering.
One day during lunch, one of the lunch ladies noticed that I was very tired and almost fainting. I went to the nurse’s office, where they recommended that I go to the hospital. After blood work in the ER, I was transferred to Valley Children’s Hospital. I was taken by ambulance, which was a really scary experience. I didn’t know what was happening or why.
Once there, I did more blood work and tests. I learned it wasn’t just a quick hospital visit, but that I would have to stay at the hospital overnight. The results came back the next day, and they told me I had leukemia.
When I heard the news, I was scared because I didn’t understand it. Everyone around me was sad and crying. I knew what cancer was, but I didn’t know what the process and next steps would be.
Chemotherapy Treatment
After my diagnosis, I started chemotherapy treatment for two and a half years. It was challenging, but fortunately, there weren’t too many setbacks in my treatment. Overall, it went pretty well without too many side effects.
I completed chemo by the time I was 14 and started attending high school after being homeschooled during my treatment.
During that time, I started to build up my confidence and enjoy my life again. I participated in cross-country, track, and was doing well in school again.
Bone Marrow Transplant
During my sophomore year of high school, I applied for a college engineering program that summer. I was accepted and had planned my whole summer around it.
But before the summer, I went for a checkup, where they told me there was a chance that the leukemia might be back. I had a bone marrow biopsy, which confirmed that the leukemia had come back and I would have to start treatment again.
Hearing it for a second time was more devastating than the first, because this time I knew what to expect and what I would have to go through. It also meant putting a lot of plans that I had, including the summer engineering program, on pause. That was really hard on me.
It appeared that I would have to go through the whole 2.5-year chemo process again. But after the first round of it, my doctors realized that over the years my body had built up a tolerance to it, so it wasn’t as effective.
They said that I could either continue this chemo treatment or we could consider a bone marrow transplant, which would be a bit more aggressive but a safer option overall. It would also be a much shorter process than years of chemo.
We decided it was best to do a bone marrow transplant. That’s when I was referred to City of Hope Hospital. I started another round of tests, including a bone marrow biopsy, that were required before the transplant.
Once I was admitted, I had to go through one week of high-dose chemoradiation, or “conditioning.” I had a lot of side effects from it, including mouth sores, which made it really difficult to eat. This was hard because I loved my mom’s cooking, and she normally brought me food every day.
Overall, the procedure went great. I didn’t have to deal with too many complications, which is fortunate because a lot can go wrong with bone marrow transplants. But, luckily, nothing did for me.
I was in the hospital for about a month in total before I was able to leave and move to another part of the City of Hope campus. I could officially go home around the third month.
After the transplant, I didn’t have to do any more chemo. I only had to take medication to help with bone marrow rejection. That was only for a year. Since then, I’ve pretty much been healthy.
My Support System
Over the years of my treatment, I really got to bond with my doctors, since you see them pretty much every day or at least once a week during treatment. Everybody that’s been involved in my treatment at Valley Children’s Hospital and City of Hope has been great, and I’m still in touch with some of them.
One of the best things my doctors did was explain the process to me really well, breaking it down so I could understand it, because bone marrow transplants can be pretty complicated. They talked about these complex issues in a simple manner that was really helpful to me at the time.
My doctor at City of Hope and I loved to talk about the Los Angeles Dodgers baseball team, and the year of my transplant they were going to the World Series for the first time in 30 years. When I was around the 90-day mark post-transplant, I got free tickets to one of the World Series games from Craig Pollard, founder of Cancer for College, who is a cancer survivor that was also treated at City of Hope. You’re not really supposed to be out much at that point, but my doctors got it approved for me to go. It was a special way to celebrate leaving the hospital.
I’m also so grateful to my family, who have always been so supportive of me. My mom always stayed with me in the hospital and was there pretty much all day, every day.
Helping Others With Bags of Love
After the transplant I was able to go back to high school for my junior year. I knew that I really wanted to do something with my second chance and make a difference. I thought of different ways I could help patients in the hospital.
One of the ways I thought of was making and delivering care packages. It’s a simple gesture, but they have a lot of meaning to the person receiving them. And receiving them from people like me shows current patients that other people have been in their shoes and got better. It could help them feel inspired by someone who has gone through the same thing.
To fund the care packages, I started selling boxes of chips. I sold them all on the first day and reinvested that money to buy more for selling. My friends started helping me sell them too. In one year, we raised $1,000 just from selling chips. We used that money to make the care packages and delivered our first 50 to Valley Children’s Hospital in the summer of 2018.
During my senior year, we started doing a lot more fundraising. We sold things like shirts, wristbands, hats, and chocolate at our school football games. I was lucky to have so many great friends who supported me and helped me sell.
In 2019, I turned 18 and officially founded our nonprofit, Bags of Love Foundation. Our mission is to provide support and love to kids with cancer.
At the beginning of that year, we delivered 100 care packages between Valley Children’s and City of Hope. We also used our money to provide scholarships to other students who were in the hospital. We ended that year with $10,000 from fundraising.
I graduated high school and went to college at California State University, Northridge, studying marketing, but we still continued fundraising.
Then in 2020, the COVID-19 pandemic hit. This significantly impacted our ability to fundraise. We had to start fundraising virtually, trying to figure out new and safe ways to raise money. We hosted drive-in movies and a virtual 5K run and tried other fundraising techniques.
Despite the pandemic, we were still able to raise $20,000 in 2020, which was double our funds from 2019. Unfortunately, we couldn’t deliver care packages during the pandemic, but we provided scholarships instead. In 2021, we were able to hand out even more scholarships. We ended the year raising close to $90,000 in total.
In 2022, we plan on giving out many more scholarships and continue to think of other ways to help patients in the hospital. I’m so grateful to have this chance to help others.
Learn more about our founder, Julian Castaneda at VeryWell Health.
